During my stay, I was given continuous IV Gentamyacin. As a result, wound up with vertigo so severe that I need a walker. I have spent most of my time since getting out of the hospital in bed. I still have Chronic Pancreatitis and there is no more surgery for me as any more will more than likely kill me. I have Diabetes, as well, and it is now controlled by diet, although I was on insulin for about two years at first.
I live in Sacramento, California. I am married and have two children, a son, 15, and a daughter, 33. I am also a computer consultant as well as a retired English teacher.
I was first diagnosed with pancreatitis about 5 years ago. The first four attacks I had were treated by a GP, who refused to believe that I was not an alcoholic (has this happened to anyone else?). I finally asked the ER personnel not to call him in, and they called the Family Practice Clinic (normally reserved for low income or uninsured patients). That doctor ordered an MRI, CAT scan, and X-rays, and promptly called in a surgeon to remove the pea-sized gallstone that was blocking my duct. Since then, I have returned to the hospital twice. The second time, a specialist was called in, and for the first time (After three years of illness); I discovered that I should be on a low fat diet, and that there were enzymes that I can take to help my pancreas function.
For the first time in years, I actually feel good, have gained back some weight, and have not called in sick to work in almost six months. Hurray! My husband is extremely happy, as he actually has a real wife again, not someone who is in constant pain and unable to perform the most mundane household duties. My kids are in heaven, because Mom is back. And I am more than ready to get on with life.
When I was first diagnosed, my husband really did not get it. Not until the third or fourth trip, when the pain and dehydration both got so bad hat I was literally in shock, he realized that this was serious, life threatening even. Then he talked to my specialist and now understands more clearly. I frequently have pain in the exact same areas, and have certainly been through the part about you must be drinking
I am one of the extremely lucky individuals that do not have to take pain medication every day. . I have a standing prescription, my doctor renews it without question, as I do not need to take them daily, and my refills show that there is certainly no abuse going on. However, I still have to be careful. If I do not stay on the diet, or make sure to get enough rest, I can count on trouble. I do not have to go the hospital every time, but that is because I take my meds, and I have the medications that I need.
I suffered from severe depression when I first started having pancreas attacks, and my doctor, (who is a specialist, and has been wonderful) not only was happy to hear that I was on Wellbutrin, but also added a very mild dose of Elavil. These medications not only treat the depression and anxiety that an attack can create, but he said that the Elavil would help my Vicodin work more effectively
According to my GI specialist (whom I love and trust), my condition will never go away. I can help keep it in remission by being a good girl, but I cannot get rid of it, and he cannot cure it. He did tell me that the cysts can go away on their own, if the pancreas can be kept "cool" enough. Mine did. I thank God daily for a doctor that listened, educated, and explained things to us. My husband not only understands my illness and its symptoms, but also can see the attack just from my complexion and the look in my eyes. He often can see them coming before I do.
I behave as if I am on the verge of an attack. I take my enzymes, stick to the diet, and monitor closely how my body reacts on those occasions where low fat eating is impossible. In the meantime, I enjoy to fact that I am not in constant. Before I found my current doctor, I had multiple, close together, violent attacks. Since he has been treating me (Six months now), I have not had a single attack that I could not get rid of by switching to an Ensure diet. I do use the grocery store brand. We have H E B's here, and their brand is good and inexpensive. The point is that it does get better.
The PAI offers me a place I can go and not called lazy or a hypochondriac.
Jill Anne Trice Boeck
My husband bob is 48, for the past 15 yrs he has numerous attacks of Pancreatitis then nothing for about 3 yrs and over the last 6 months he has had about seven attacks. We have done the route of indigestion Ulcer. Etc.
After his last attack we saw a gastroenterologist at Gloucester hospital, he did numerous tests, and after a MRI scan came to the conclusion that he has a very large Cyst in the Pancreas. It is located in the centre, He also has had some blood results showing that there are cancerous cells present, but the specialist says nothing to worry about for another 6 -8 weeks when they will redo the tests. We are now seeing the Dr under Bupa as we found out we had employers cover.
They have prescribed Creon 1000, which he takes about 5/6 with each meal and some morphine based painkillers, Tramadol, which I did not think were morphine based. These have kept the pain at a reasonable level, and his Smelly floaty stools have now returned to normal. He is now very under weight and I think he looks like a walking skeleton. He has just had the past week off his work due to a mild attack, which we managed at home, with painkillers and starvation. He refused to go to the GP, as all we get is hassle when he is admitted via the A/E route. The usual thing is well he needs to stop drinking! This really upsets him, as he has never been a drinker.
I hate to see him looking so ill and he has no
and desperately needs to put weight on.
Today, January 7, 2004, at 11am GM, we will be saying our goodbyes to Bob, the most wonderful man and father. Sadly, Bob died through complications to a Nerve Block that was supposed to help him.
23rd July 1954 - 28th December 2003
Sleep Well and God Bless
The last four years have been rough. In 1997, a pick up truck ran over and killed my 8-year-old daughter, Candice, when she tried to cross the street. I had my first attack with Acute Pancreatitis in May of 1998. I was hospitalized and on life support for fourteen days, in 1999. My pancreas hemorrhaged which caused me to develop ARDS (Adult Respiratory Distress Syndrome). As a result, my lungs collapsed, and I was on a ventilator (life support system). My oxygen saturation had dropped to 35%.
It was a miracle I lived.
I also have Hashimoto's Thyroid Disease, Barrett's Esophagus, a Hiatal Hernia, and Hypertriglyceridemia. The latter is what caused my Chronic Pancreatitis. The proverbial last straw occurred last October 2000. I was in the hospital with another attack of Acute Pancreatitis. I quit breathing and required CPR.
It is rough not being able to work. For the last eighteen years, I worked in law enforcement. For ten years, I was a deputy sheriff in Tampa, Florida. After moving to Safford, Arizona, I spent eight years as a probation officer. I still live in Arizona, although I have not been able to work for some time. May 2001, I went on disability.
My 13-year-old son, Clint, lives with me.
Dave died from pancreatitis. He was admitted to hospital on 22 April 2003 with jaundice and he was diagnosed with a pseudocyst on his pancreas. He gradually deteriorated until he suffered multiple organ failure and was admitted to the Intensive Care unit as Sheffield Royal Hallamshire Hospital.
He was not expected to pull through but the staff did a marvelous job and, after spending 7 weeks in Intensive Care he was moved to a general surgical ward.
Dave seemed to be gaining strength and was allowed home in early September but he had a relapse and was rushed back into hospital after a week. Despite all the best efforts of the consultant the damage to his liver and pancreas was too severe and he did not recover.
We managed to move him to a wonderful hospice close to home just 24 hours before he died. We were also married 3 days before he died after being together for 27 years.
I love and miss him so much.
My name is Fliss. I live in the UK and have
Hereditary Pancreatitis for 53 years. The TP, Total Pancreatectomy, was
discussed last year when I was finally diagnosed with Chronic
well as the HP. This was due to both the risks associated with HP and
that I was having ongoing severe pain.
The Royal Liverpool Hospital has one of
leading specialist pancreatic units, led by Professor Neoptolemos.
surgery could be performed here, the ICT, Islet Cell Transplant, is
although it has been done at Leicester. Professor said with the
of my disease, obtaining a sufficient number of islet cells would be
There is significant damage to my pancreas, as it is atrophied and
I have pre-diabetes and am expected to be diabetic very soon. "Could be at any minute" is what both the gastroenterologist and Professor Neoptolemos say. That was a year ago, however! I suppose I would have fewer doubts regarding the surgery, if I were already diabetic, since I would have less to lose. As it is, I am very blessed and thank God every night for another good year diabetes-free. That is one more than the doctor’s expected. If this changes and I develop diabetes, I may well reconsider my position.<><>With the help of Creon and a low fat diet, I am, actually, managing the condition better now, than I was this time last year. I was about to hand in my work notice, for example, but have been able to continue working. At least up to now. I do have ‘bad days’, as well as ‘bad hours’ on ‘good days’. On the flip side, that gives me an awful lot of good days, as well as ‘good hours’ on bad days. This is essentially why the surgery has been shelved, at least for the moment. <>
I received word a couple of weeks ago that my SSI and SSDI were approved. It came in time as we were served with an eviction notice and were due to be evicted from our home. I thank God that this news came just in time. I received all the back pay from SSI and will receive my first SSDI pay on April 3rd. I find this amazing to say the least as it was approved the first time through, with no attorney. I have heard so many nightmare stories about people that truly needed SSDI and being turned down. I have a cousin that is having that very problem and has an attorney and the whole 9 yards.
I have so many blessings to be thankful for. A very loving and understanding wife who stands by me through all my painful times and visits to the ER. She is with me no matter what time of day or night. Things had gotten so bad she had to quit her job to take care of me, and she did this without any selfishness. After my Whipple Procedure she was there for me constantly when I needed help, even in the middle of the night when I needed to wake her up to help me out of bed for a trip the bathroom, or if I needed pain meds or just a drink of water. Even if I just woke up, could not get to sleep, and needed to talk she was there for me. She was there when the pain got so intense tears would be streaming down my cheeks she would hold me and say, "I wish there was something I could do to help stop the pain.” She would hold me and cry with me.
My family, Mother, Sister, and Brother all call me on a weekly basis. We live 8 to 12 hour drive from each other so we do not get a chance to see each other often. It has been a year and a half since I have seen my mother. She will be 76 years old on April 18. Her sister and a cousin are making the trip down to South Carolina in April. They plan to leave the day before my Mother's birthday and should arrive on her BD and staying for Easter. I know it will be a very emotional time. They have not seen me since before the Whipple. I am finally gaining some weight back but am hanging around 119 to 120 pounds. Before the Pancreatitis, I weighed around 165 pounds. I know my Mother will not be prepared for what she is going to see when they arrive. I was a muscular 165 pounds as I used to pump iron. All that muscle is gone now, as I did not have a lot of fat to lose it worked on losing the muscles I had. I am nothing but skin and bones now but I keep on keeping on because of the blessings I have in my life.
I was referred to a pain management specialist and have had my records sent to him/her. My wife talked to them on the phone the other day to make sure they had received the records, which they had. My wife asked them about the pain meds I am on prescribed by my physician/surgeon, which have been working quite well for the pain management I might add Oxycontin and Neurontin for the pain and Oxycodone for the breakthrough. It turns out that this pain management specialist and the group that he/she works with does not prescribe these pain meds
I also am having cold nose, cold and numb feet and fingertips. I always seem to be cold. I used to be a heater for my wife, now it is the other way around. The ring finger and the small finger on my left hand and that part of the palm of my hand are numb to a certain degree ever since my Whipple Procedure. .
I wish I could find out more about the numbness in my feet. The balls and toes are numb on both feet and have been for several years now, even before I came down with acute/chronic Pancreatitis. I cannot seem to get a doctor to address this problem; they just seem to shrug it off instead of referring me to a specialist for it. .
I am 50 years old and was diagnosed with Acute Pancreatitis, then Chronic Pancreatitis two years ago. I could not even begin to imagine having it for as long as you have. Take care and if you happen to find out why you have the thick blood and the cold fingers, toes etc. please let me know. .
I do know I had problems with blood being drawn at one point and it turned out that I was dehydrated due to not drinking enough water and fluids. Make sure you drink plenty of fluids, preferably water; I have found that that helps the problem with drawing blood.
November 9, 2003
I wanted to get on and make sure everyone who knew Floyd was aware of the sad fact that he has passed. He died on the 9th due to double pneumonia. He had been diagnosed with pancreatic cancer in Sept., so we knew he did not have long. He wanted to come home to NY to see family and we were able to make that happen for him. I take comfort in knowing he is healed and there is no more pain for him, but I miss him terribly. I know he chatted with many of you and I wanted to be sure and thank all of you for the help and advice you gave us, and the time you spent with him. He will be missed until we meet again in heaven.
God Bless all,
I also just want to express a thank you to all who have spoken with my dad. I have been lurking here and only posted one time. I also want to give a huge Thank You to Ruby for taking such good care of him for as long as she did. God won’t forget that. Thanks for the good thoughts that came our way in time of sorrow.
December 8, 2003
I am now home in SC. I had to get home as it was snowing up there, (BRRRRRRR) Anyway; I had a really hard time the first day home. Everywhere I looked, I thought I saw Floyd. Even though I knew the holidays would be hard, I am not enjoying them without Floyd.
I don't want to depress everyone else around me or spoil the holiday for my daughter and grand-daughter, so I am trying to put on a happy face. It is getting easier and I am doing better.
May you all have improved health and pain-free holidays at least!
You are in my prayers everyday! .
God Bless you and yours,
I joined found this group this past April while I was searching for anything and everything I could find about pancreatitis. I was desperate. I am so glad that I did. I rarely ever post but do read the post almost every day. I have had chronic pancreatitis for over 4 years and I definitely can relate to what you all have gone and are going through with this terrible disease.
After finding this group and reading the post I started reading about a woman named Shirley who had been cured. This really caught my interest. Cured? How can this be? I felt I was doomed to a miserable life. All the doctors that I had seen basically said there is no cure; if you have your pancreas removed you will be a brittle diabetic and did not recommend it. I finally e-mailed Shirley direct and asked her questions about it. She was so helpful and is truly a caring, wonderful person.
I contacted Dr. Sutherland's office in May and was sent the info and started the insurance approval process. This was a very slow process and the waiting was awful. I just found out last week that I was approved. Thank God!! Dr. Sutherland will be doing the surgery on October 15. I am so looking forward to a life without pain and being able to eat normally again.
My name is Leslie. I live in Baltimore, MD. I am a 40 year old and was diagnosed 5 years ago with Acute Pancreatitis. I was pretty sick for several years before that. My diagnosis now is Chronic Small Duct Pancreatitis. I've even had a specialist tell me I didn't have it, that I only had IBS.
I have been in and out of the hospitals; it's worked out to be about once a year. In the last two years I've been hospitalized for a total of three months. In the beginning I threw up all the time, every other day. That has now stopped, it is only once a month & sometimes less. They have opened my duct because it was so blocked, in the fall they put a stint in it, stretched the duct to make it bigger. The stint was only in for a week and they took it out. They said it did its job.
I've been told so many things I don't know what to believe any more. I honestly don't think I will ever get better. I feel sick all the time; I do have some "good days." I am in almost constant pain. I am on Oxycontin and Oxycodone (may not be spelled correctly). I am so frustrated and depressed. I take enzymes; I don't know that they help. I am on a no fat diet.
I've read several of the stories and feel like I can relate. It is so comforting to "talk" to someone like me. No one seems to understand and I guess I don't really expect them to. I know I get very depressed from being sick all the time. My husband is so supportive and helpful. I don't think I could get by without him. I am starved for information from other people with the same illness. It is so nice to know there are others out there that understand. Looking forward to getting to know you and others like me!
My name is Nicole and I'm 16 years old. Since I was seven years old I would always get that pain where you just want to say God bring me home because I can’t take it anymore. I basically lived my childhood days in the hospital, where the doctors and nurses knew me inside and out. But they never knew what was wrong with me. Through the years I had to fight every time I went in the hospital because they thought I was drug seeking. It got to the point where I would just scream and cry in my parent’s arms as they cried with me.
I found it so hard to be alone with no answers and no one to say, “Oh, I know that pain.” Years went by where I went through about 8 different hospitals, had every procedure in the book. At home I would cry my self to sleep. I would cry even more because I was so scared and didn't want to go to the hospital. The doctors and nurses never believed me. The day that changed finally came. It was the last day of 6th grade; I was 11 years old. I went to my cousin’s graduation and afterwards we all went out to celebrate. I ate everything; pizza, mozzarella sticks, wings, all the junky foods. Well, at 2 o'clock in the morning I was screaming and crying for dear life as I'm telling my mom that I loved her and that it was time for me to go to heaven with the angels. She held me and cried and took me to the Emergency Room.
I barely had one foot in the hospital when I started throwing up bile and nearly fell to the ground. They immediately rushed me back into the Emergency Room. By the time they got me back there my skin had turned yellow; they couldn't believe it. I was in so much pain I was screaming at the top of my lungs for God to take me to somewhere that would make me free of pain. None of the doctors knew what was wrong with me; they just knew it was serious. I couldn't even lift my head up I was in so much pain. Finally the next shift came, and the new doctor listened to everything my mom told him. He told us I had symptoms of Pancreatitis. The doctor's partner said, “No way, she's too young to have it.” They did blood work and an hour later they said my Amylase was in the 7,000's and my Lipase was in the 4,000's. The doctors couldn't believe it. They were in shock. They blamed it on my gall bladder, which did have sludge, so they removed it.
A few months later the same thing happened. My Amylase and Lipase were once again off the tracks. This time they didn't know what to do. Then all the procedures started. I cried through every one of them. I was in Children’s Hospital but they didn’t know how to handle pain when it comes to Pancreatitis. I would just sit there and cry in my moms arms. Last year I nearly died from being so sick. I spent six months in the hospital. Every time they hit a roadblock and didn’t know what to do next, I would be transferred to a different hospital.
I spent my birthday, Christmas, New Year’s, Valentines Day, St Patrick’s Day, and most other holidays in the hospital. I hated being in the hospital. The pain was so bad the only thing I could do was cry. My parents were always there for me. That night they were both by my side. I remember saying, "Mom, grandmom is waiting for me. She wants me to go home with her.” My grandmother passed away, but we were very close. I said, “I need to go now, Mom.”, and I kept saying it. She started to cry and she said, “No, Nicole, you can fight this; you can beat it. Don't let it beat you.” And we both cried. It was the hardest thing to go through in my life. After that she took me out of the hospital. I was still really sick, but they were not doing anything to help me. I was taking a Fentanyl Patch 75 mg and Demerol 100mg for pain.
My Mom kept doing research. She found a doctor in St. Louis who specialized in Pancreatitis for kids. So we drove out there and he performed surgery on me January 17, 2003. He cut off three inches of the tail of my pancreas. He then found a nodule and that my bile duct didn't flow all the way through the pancreas. The surgery lasted six hours.
I did well for about 2 months. Then the pain started to come back. This time, when I went to the hospital, however, my Amylase and Lipase were normal. I ended up in the Emergency Room sixteen times that year. A few weeks ago I ended up in the Emergency Room again. I said to the doctor, “Oh, my Amylase and Lipase will be normal because ever since I got my surgery they have been staying normal.” He said ok but he had to check anyway. And when he walked in I knew something was wrong when he looked at me and said Nicole your blood work came back. And I said, “It’s normal right?” When he said they were elevated, my mom and I nearly cried because I only have 2 inches left of my pancreas. An ultrasound showed that my pancreas was inflamed.
I'm scared right now, because when I got my surgery
year I didn't know about Dr. Sutherland’s surgery. If it comes down to
it I'm afraid I might not have enough Islet cells for him to use. It
just been so hard that I'm to the point where I just want to give up.
still so hard. No one other than my parents understands the severe pain.
PS: For the ones who are out there going through this speak out and make them doctors listen to you. Don’t give up and let them win.
Annette Finocchiaro (Mother)
Eight-year-old Risha Shukla was all smiles at her birthday party last week, but it wasn’t because she was opening gifts. Instead, the soon-to-be third grader and her 25 helpers were working hard to put smiles on the faces of bedridden children by making colorful cards. And instead of presents, she collected $37 in postage money to send the cards to hospitals across America.
Diagnosed with a rare disease called chronic pancreatitis at age 3, Risha knows what it’s like to be stuck in the hospital. She’s been to the hospital countless times and spent a few weeks far away from friends and her sister, Rhea, undergoing a 10-hour surgery in Minneapolis, Minn., in March.
"When I woke up, you know what I saw?" she asked, her brown eyebrows raised. "A bare white wall," she answered, pronouncing each word with a grave look.
But that "bare white wall” became a mosaic of cheerful greetings and drawings when her sister Rhea’s teacher, Arlene Mottershead of Tiny Tots, had Risha’s friends secretly make cards at a going-away soccer party she threw for Risha. "It made my room so cheerful. I would roll my wheelchair up to them and read them over and over again," Risha said, with a big smile.
"When they are sick, they don’t have a smile on their face. It makes them better," said her 6-year-old sister, Rhea, of how the cards affect sick kids. She witnessed her sister’s transformation first-hand, when she traveled to Minneapolis to visit her older sister in the hospital. Now, the two sisters and their Kids Who Care club want to do the same for other sick kids.
Pancreatitis is an inflammation of the pancreas, the organ that secretes enzymes and hormones such as insulin to help the body digest food. When it flares up, the enzymes become active inside the pancreas and attack the organ’s tissue instead of being released into the digestive tract, causing severe pain. Eventually, the entire pancreas can be destroyed, resulting in type 1 diabetes. While the organ’s removal helps with the pain, it also causes diabetes unless insulin-producing islet cells are transplanted to the liver at the same time.
With only a handful of doctors around the country performing the expensive procedure, Anisha and Chet Shukla had no choice but to leave their youngest daughter with Leticia Wuertz, a neighbor, and travel to the Diabetes Institute for Immunology and Transplantation in Minnesota for Risha’s surgery. Two-thirds of her pancreas was removed to relieve the pain. To prevent progression to diabetes, islet cells were extracted from the pancreatic tissue and implanted in her liver.
"There (in her liver) they can survive and won’t be scarred or subjected to the pancreatitis," said her doctor, David Sutherland, in the Department of Surgery of the University of Minnesota. He said the success rate of preventing diabetes with the complete removal of the pancreas and islet cell transplant is about 75 percent for patients with no previous operations. In Risha’s case, the chances of success are even better, because she still has islet cells in the remnant of her pancreas as well as those transplanted to her liver.
Since she’s been back, Risha has been educating her classmates about the disease and made presentations to her second-grade class at Westwood Basics Plus Elementary School and first graders at Vista Verde School. She even melted the heart of Northwood Albertson’s store manager, with her presentation. He promptly donated ice cream for the birthday party.
The party was held at Northwood Elementary, across from the Shuklas’ home, and yielded 84 cards decorated with markers, glitter and stickers. Each child made at least four cards before moving on to games and ice cream.
"My little girl keeps on amazing me. She didn’t ask for presents or mind that Happy Birthday wasn’t sung, or that she had no cake with candles to blow out," said Risha’s mother. She hopes to throw a card-making party every couple of months and send an average of 20 cards to each child they hear about.
Forced to take leave from her job with First Team Real Estate, she now stays at home to oversee Risha’s weekly doctor’s appointments and tests. The mother and daughter team spent the last three days at Hoag Hospital. Now on a single-income budget, she and her husband, Chet, have practically given their lives over to educating people about their daughter’s condition and raising funds to help with the rising costs of care.
The March hospital stay alone ended up costing around $77,000, and the surgery bill has yet to arrive. Anisha says that she expects the total cost to be around $120,000 to $130,000. Their insurance company is considering each bill individually and has not promised any payment.
The two created a nonprofit
through the Children’s Organ Transplant Association to help raise the
recruiting friends and people from the community to help. While only
has been raised so far, Anisha is hopeful other community members will
get involved. She said they still need help filing the nonprofit
for another awareness group they created called Children’s Pancreatitis
Organization, and they need someone to keep the financial records
To provide more information, the Shuklas have created a Web site at
Tax-deductible donations may be sent to COTA for Risha S., at 2501 Cota
Drive, Bloomington, Ind., 47403.
Thank you for the warm welcome! My name is Sandy Towns and I live just east of Toronto, Canada, in the Town of Ajax.
For the past twenty four years I have called Canada home. I originally hale from the city of Dundee, in Scotland. I am a forty eight (soon to be forty nine) year old male. I am married and have a family.
Back in the summer of 2003, I began feeling run down, developed a low grade pain in the left side of my abdomen, which prompted a visit to my family doctor. The blood work revealed elevated enzyme levels, both Lipase and Amylase! I was informed by my family doctor that the levels related to my pancreas. To be honest, I had no idea what functions my pancreas was responsible for.
I was sent to see a specialist who requisitioned a CAT scan. I was told that the results were OK. However, the technician noted that the head of my pancreas was slightly enlarged by 3cm. The specialist put my condition down to IBS and told me to take Metamucil every day. After sever weeks the pain did go away.
Unfortunately, in December the pain returned. The pain and symptoms were more noticeable this time. I had more blood work done, the levels were elevated again! I felt very tired and had little energy. This time the specialist sent me for an ERCP which he performed. I will get the results on Thursday Feb 5.
I have read quite a bit about pancreatitis, mostly information I found on the net. The pain in my abdomen is still there. My energy level is very low. I find I get light headed at times. Although I do not appear to suffer from all of the typical symptoms associated with the disease (stabbing pain, radiating to the back area) it is debilitating none the less.
Did I drink? Yes I did. I would describe myself as a social drinker. There was no binge drinking, no drug abuse. I do not feel half as bad as I did around Christmas time. I have been told my Lipase and Amylase levels have dropped to more normal readings. I guess this fact disturbs me, as I still feel out of sorts, tired and somewhat frustrated! I was also informed my vitamin B levels were down!
I've been having bouts of pancreatitis for about a
now. Without going into the details, I have had less than
diagnosis and treatment from the medical community of the Albany, NY
I have reached the conclusion that I need access to a support group to
obtain correct up-to-date information about available treatments.
Any information you can give me about a local support group will be
About 15 years ago I developed a burning pain in my upper abdomen which ran up into my chest and it was subsequently was determined that I have a torn diaphragm which leads to acid reflux disease (the stuff which has now become part of the pop culture with the advent of Nexium advertisements on TV). Over the years I've been able to take care of the reflux condition with medications. Then about three years ago the abdominal pain came back and was not helped by any of the medications for stomach acid. After a year of experimentation, my general practitioner referred me to a gastroenterologist. The gastroenterologist had the bedside manner of Don Rickles and I had to believe that a doctor who treated his patients like that was either incredibly arrogant or just plain stupid. Hoping for the former, I stayed under his care for a year and he tried this, that, and the other diagnosis and treatment; all without success.
At that point I told my general practitioner that in needed a referral to another gastroenterologist and she gave me one. During the first office visit the new gastroenterologist asked me what I did for a living and I told him that I was a retired engineer. The doctor then told me that if I had been an engineer, I must have a "Type A" personality and my health problem was all in my head. Therefore should go see a psychiatrist. However just to be sure there was no physical problem, he had me get an ultra-sound of my gall bladder. A week after the ultrasound, the doctor's nurse called me and said my gall bladder was full of sludge and I should go see a surgeon. I had my gall bladder removed. For three glorious weeks I felt fine and then the pain came back. I wound up in the hospital emergency room. My regular gastroenterologist was out on vacation and one of his compatriots did an ERCP in which he enlarged the opening from the common bile duct into the small intestine. The ERCP brought on a ferocious bout of abdominal pain whose source was undiagnosed (now I'm pretty sure it was a bout of pancreatitis). I was hospitalized for a couple of days. After I got out of the hospital I had recurring bouts of pain and I went back to the gastroenterologist and he told me that I had a neuopathic problem (fancy way of once again telling me "it's all in your head"). He prescribed some nerve medication whose dosage I was supposed to take at an increasing rate. That is, take one pill the first day, two pills the second day, three pills the third day ... six pills the sixth day and afterwards. And just to make sure there was no physical problem, he ordered some blood work to check, among other things, pancreatic enzymes. I took the nerve medication which did nothing for the pain and gave me hallucinations. After about a week of this course of treatment, the doctor's nurse called me and said that the blood work showed I had pancreatitis and that I should stop taking the nerve medication. I pointed out to her that the pharmacist's sheet said that to go off the nerve medication abruptly would lead to seizures and asked if that was what she wanted me to do. She checked with the doctor and said that I should taper of the nerve medication as the pharmacist had suggested. She also put me on a low fat diet and gave me enzyme capsules. After six to eight months of this treatment and recurring attacks of pancreatitis, the doctor out of the blue decided that I really didn't still have pancreatitis. However just to be sure, he took another blood test and the enzyme levels showed that I did still have the same problem. An endoscopic ultrasound was performed to look for cancer and found nothing. Then a second ERCP was done to give the pancreatic duct and the bile duct separate openings into the small intestine. The immediate result of the ERCP was a tremendous attack of pancreatitis requiring nearly a week in the hospital. During my hospital stay my gastroenterologist did not treat me. Instead one of the other partners in his group practice handled the case. When it came time for my hospital discharge, the gastroenterologist that had been treating me in the hospital told me go back to my regular gastroenterologist for a follow-up and I told him that wasn't about to happen. I'd had enough and told him about all the mis-diagnoses, etc. He said he would take over my case. Since my discharge from the hospital I've had two attacks of pancreatitis at about 5 - 6 week intervals. In both cases I've managed to keep out of the hospital but for the one from which I'm currently recovering it was touch and go about whether or not to head for the hospital to get some pain treatment. During the whole episode, the gastroenterologist did not talk to me and my contact was with his nurse. Her parting question today was to inquire if I was on medication to help eliminate future attacks. I said no and asked her what medication she was talking about (the doctor had previously told me they have done everything they can for me). She clammed up and offered no further information. Is there really medication out there to help prevent these acute attacks?
As you may surmise, I've pretty much lost faith in the local medical practitioners. That's why I'm looking for a support group with whom I can share information and perhaps find a course of treatment which will allow me to live the rest of my life in some reasonable manner.
Things are looking up. I think that I've found a
with whom I can work. Earlier this week my wife and I sat down
him and for the first time since I've had these health issues, we had a
rational discussion with a physician that
treated us as members of the human species. He listened to what I had to say and didn't treat me like an imbecile, drug addict or alcoholic. He started off by saying that I don't have pancreatic cancer because if I did, after all the time that has passed, I would be dead. Although I had already figured that out, it was a promising start to find a doctor that could at least reason it through. The last doctor spent most of his time looking for cancer. The one before that spent most of his time testing my heart.
The next thing the doctor did was ask what I was doing for pain relief and I showed him the relatively ineffective drugs I was using. He said, "Don't take that stuff." and then wrote out a prescription for pain medication that works and in a quantity such that I don't have to ration it so I don't run out. Then he got down to discussing a treatment for my illness and developed a course of treatment which will hopefully bring some long term relief or maybe even closure.
This appointment was like a breath of fresh air when compared to the physicians with whom I had been dealing. When I was in college in the 1960's, I knew a number of pre-med students; some of whom I could never envision as being successful physicians. I always wondered what would happen to those people as they progressed through the preparation process to become doctors. Unfortunately over the past couple of years I have found that some of those types do become physicians and heaven help their patients!
James G. Eignor
My story is lengthy, but I’ll try to modify it. I had gall bladder surgery 5 yrs ago and my pancreatitis started immediately following that. But it wasn’t diagnosed until 2yrs later and then it took me another year to find a doc that was very knowledgeable. I have had numerous ERCPs, some putting in a stent, but none were successful to keep my pancreatic duct open and draining.
I live in Klamath Falls, or, only 3 miles from the California border. I see a Dr. Kozareck at The Virginia Mason Medical Center, in Seattle, Washington, almost 500 miles away. The surgeon is Dr.Traverso, at the same facility. They both seem very knowledgeable and caring and speaking at many conferences and meeting they must be up to date on current therapies.
I have had the Whipple done twice. After the first surgery I kept telling the docs that I was in a lot of pain again---5 mo after surgery--and they kept telling me everything was great with the remainder of my pancreas and the duct was draining well. I had the surgery because the duct was completely closed off. So I put up with the pain until I was just in misery, went back had an ERCP and the duct had completely scarred closed.
I have a lot of pain and weight problems. I was so thin that I had to have feeding tube in for 7 wks before I weighed enough for them to do the surgery again. I have gradually lost all of that. I’m 5ft 7in and weigh 100 lbs. Now, 9 months after the 2nd surgery, I am also in a lot of pain again and am scheduled to have an EUS for a celiac block this month the 18th.
I am not mad that I had the surgeries because I really had no other choice. But unfortunately it didn’t slow down the cp, I didn’t realize that the surgery could be a success yet the cp could just go on!! I am at the point where I guess there isn’t anything more they can do, except remove the pancreas, and my remaining pancreas still produces insulin.
I have never heard of Pancreatitis until I was diagnosed. September 1998 I had 70% of my pancreas removed. I feel like I could write a book on my experiences. I had an acute attack in December 1997. I was not aware of any prior symptoms such as stomach pain. I came home from grocery store, walked in the door and everything got hazy. My heart started beating so fast I thought I was having a heart attack, so I told my wife to take me to the emergency room. They admitted me, ran some tests, and one hour later told me I had Pancreatitis.
I stayed in the hospital for 10 days. I did the usual thing: Demerol & fluids, sent me home, said I was fine, assigned me to a GI doc for follow up, and he said I would be fine. This is where I wished I knew more if there was something I could have done to avoid the events that followed.
When the next attack hit me in September 1998, was when my pancreas ruptured spilling enzymes throughout my internal organs. Of course I did not know any of this had happened as I was unconscious for 2 months from Sept to Nov right before Thanksgiving. I was in the Presbyterian Hospital in Charlotte, North Carolina. They finally let up on some of the drugs, when I woke up I found out what had happened. I was attached to ventilator, PIC lines out both arms, seven Jackson Pratt bulbs (drainage tubes), a feeding tube, and 70% of my pancreas had been removed. The surgeon told me the infection was so bad it was like scooping a bathtub of mud out with a spoon. I finally was discharged in early February, 1999.
Unfortunately, I kept having severe pain and was in & out of the hospital for months afterwards. There was nothing else the doctors could do for me. Finally, my GI doctor sent me to the Presbyterian Pain Clinic. They are the nicest people in the world. They put me on a program taking Methadone & Percocet for breakthrough pain. Before I could do nothing but sit & lay down. After I was in the pain program my life changed. It has allowed me to get out & walk. I am slowly getting my strength back. I stayed on that a couple of years. I am off pain meds now, but am not pain free. I am dealing with it.